Sunday, April 30, 2017

Today ends another Autism Awareness Month. As many autism
parents point out, every month, every day, and every minute (all 525,600 of
them in a year, as Alex reminds me) mean autism awareness for our families.
Beyond the blue lights and puzzle piece ribbons is the reality that more and
more children are being diagnosed with autism, and the mainstream medical
community seems to offer no real reason why. Moreover, the educational system
and therapeutic support systems cannot handle the influx of all these kids with
autism. As they age out of the educational system, programs for adults with
disabilities cannot handle them, either, and many are not getting the services
they need. That is true autism awareness.

Like many parents of adults with autism, we have our beloved son at
home with us, requiring 24/7 care. He needs structure and routines to keep his
anxiety from escalating. In fact, we keep a schedule posted on our refrigerator
door for him to consult anytime he is concerned about what will happen next,
even though he knows that we honor his precious timetable.

9:00 A.M.—Get up, take pills with juice

10:30 A.M.––Eat breakfast

11:00 A.M.––Brush teeth

11:30 A.M.––Eat lunch

12:00 P.M.––Change clothes

4:30 P.M.––Decide what’s for dinner

5:00 P.M.––Eat dinner

6:00 P.M.––Take vitamins; bath time

7:30 P.M.––Have dessert/snack

10:00 P.M.––Take pills, brush teeth, bedtime

Just to clarify, Alex needs help with every single item on
this schedule. He takes a dozen pills three times a day and needs us to
administer them to him, even though he can thankfully swallow pills. Because
his hands shake from one of the medications to keep his anxiety under control,
and because he has poor fine motor skills, he cannot pour his own drinks or
prepare his own food. He also lacks motor planning skills, which means he needs
help with brushing his teeth and changing his clothes. For this reason, I think
of our family life in half-hour increments, knowing that Alex will probably need
Ed or me to help him with something in the next thirty minutes. In addition, he
has other tasks he assigns me at specific times, such as working the newspaper
Sudoku puzzle at 1:30 and watching Jeopardy with him at 3:30. Also, his
afternoons are scheduled with therapy sessions that I coordinate for him.
Although he has become more patient over time, he values punctuality and can
become unnerved if his schedule doesn’t go as planned.

Mind you, we are extraordinarily lucky parents in the autism
lottery. We have a child who can verbalize––albeit awkwardly––what he wants and
needs; only about half of people with autism are verbal. Unlike half of people
with autism, Alex does not wander away from safe places so that we don’t have
to worry that he’ll drown in a pond or get hit by a car in traffic or a train
on railroad tracks. We are also fortunate that he can use the toilet
independently and does not have chronic diarrhea or constipation, as many with
autism do. Moreover, he doesn’t smear his feces as many do; he even flushes the
toilet and puts down the seat, so I count my blessings daily on that score,
especially since he was thirteen before he was potty trained. Also, we are
grateful that Alex has overcome the sleep issues that plague many with autism
so that we can all enjoy a good night’s rest that many families cannot.

God has also blessed us with a tremendous support team of
professionals who genuinely care about our family and have helped Alex make
good progress in his skills. Sadly, many families do not have these essential
resources to help them. After dealing with extreme anxiety that fueled
aggression, proper medication and therapy have allowed Alex to cope with his
emotions so that he can enjoy life and so that we can have a peaceful family
life. We know just how precious this existence is.

While we truly appreciate the progress Alex has made, we
know that many families face struggles every single day because of autism, and we
can empathize with the frustration they feel. I know how overwhelmed I can feel
trying to meet Alex’s daily needs, and I can imagine that those with children
who have even greater needs must be even more frazzled. We need to move beyond
autism awareness and autism acceptance to autism action. Something needs to be
done to help families cope with the daily burdens of autism: more useful
research, more funding, more resources, more support. In the meantime, I
continue to pray for a cure for autism so that Alex and others with autism will
be healed completely and their families who love them can enjoy more abundant
lives, freed from the obstacles autism presents. When the need for Autism
Awareness Month disappears––now, that will be truly something to celebrate!

“O Lord, if You heal me, I will be truly healed; if You save
me, I will be truly saved. My praises are for You alone!” Jeremiah 17:14

Sunday, April 23, 2017

Trying to teach middle school students the last weeks of
school is always a challenge, even for veteran teachers like me. However, this
spring a popular gadget is interfering with the learning process, despite its
inflated claims of being a panacea for students with special needs. Advertised
as the “must have toy for 2017,” fidget spinners are appearing in classrooms, much
to the dismay of many teachers. While these handheld plastic flat triads with
three bearings that can be spun supposedly help students with ADD, ADHD, OCD,
autism, and anxiety, they are creating anxiety for many of the teachers whose
students are bringing them to class.

Despite no studies showing their effectiveness, these fidget
toys claim to relieve and reduce stress and anxiety, increase focus, build
concentration, and help with boredom and restless hands. Some companies even
market the fidget spinners as “educational toys.” The fidget spinners are also
described as “addictive,” the one adjective I will agree is true. The low cost
of these spinners––anywhere from $1-20, with most priced around $5––makes them
affordable for nearly all students. The fidget spinner takes the place of the
typical spring appearance of rubber bands to shoot, paper airplanes to throw,
or the ever-popular erasers to toss. However, students claim they need these
spinners to focus and be calm. Either they bought the hype or think that their
teachers are that gullible.

To summarize, a fidget spinner is an attractive nuisance. If
one kid has a spinner, everyone in the class wants to see it, touch it, spin
it; they are mesmerized by these gadgets. They want to pass them around so that
everyone can enjoy all the benefits of these miraculous inventions. Certainly,
this does help them with boredom, as the ads claim, yet their focus and
concentration are upon a stupid piece of plastic with metal bearings and not on
what they are supposed to be learning in class.

Moreover, the sound of the spinning bearings poses a
distraction. One ad claims that the low humming sound actually “helps promote a
sense of calm.” As the teacher, that humming sound makes me want to take that
spinner and throw it out the window, so it clearly fails to calm me. I suppose
these fidget toys have become necessary because students cannot bring their
phones or video games to class, and they simply do not know what to do with
their hands when they aren’t holding an electronic device to entertain
themselves.

Yet another disruptive fidget toy appearing in classes this
year with similar claims of positive effects is the fidget block. Ranging in
cost from $5-10, these cubes have various buttons and knobs on each of the six
sides to provide sensory stimulation. While some of these fidget blocks claim
to be silent, others make the same annoying sound made by the clicking of a
retractable ink pen. Of course, one of the problems with the fidget spinners or
blocks is the potential for dropping the item, which proves distracting for the
entire class. However, these fidgets are slightly better than stress balls that
roll down the aisles.

As an autism mom, I understand that some children do need
sensory toys to help them focus and/or remain calm. However, as a teacher, I
see many students jumping on the sensory issues bandwagon who don’t really need
a fidget toy but just want to have something to play with in class. Because
teachers must protect the privacy of our special needs students who are
mainstreamed, regulating the presence of sensory toys becomes problematic.
Consequently, I’ve had to accept the fidget toys so long as they remain in the
owner’s hands and are used properly. However, when they start sharing their
spinners with their friends and or taking them apart, they become mine until
class is over.

If, indeed, students truly need to have sensory toys, I
would recommend the following alternatives: pool splash balls, squeeze blocks
that look like Legos, and desk buddy rulers. The advantage that all three of
these items have is that they do not roll, would not inflict injury if tossed
across the room, are silent, cannot be taken apart into pieces, are
inexpensive, and have actual sensory value to students with sensory needs. The
splash balls intended for playing in swimming pools are made of soft material
lightly stuffed with polyester filling. They are lightweight, smooth to the touch,
squeezable, and unlike stress balls, cannot roll easily. Squeeze blocks offer the same
benefits. Desk Buddy rulers offer the various tactile stimulation of a fidget
cube without the noise or likelihood of falling off the desk and rolling on the
floor. If parents are considering buying sensory stimulation toys for their
children with autism or ADD/ADHD, I would recommend any of these three items
instead of the fidget spinners and cubes.

While students who actually have stress, anxiety, and
focusing issues should have their needs met, those claiming to have these problems should not be playing with toys that distract them, their classmates,
and their teachers. Good alternatives exist for students who truly need sensory
stimulation, and parents and teachers should seek these items instead.
Fortunately, teen fads rarely last long, and spinners will likely spin out of
favor just as quickly as they arrived in classrooms this spring. After dealing
with students doing the "dab" dance arm movements in the fall, we teachers know
that annoying fads will eventually go away and be replaced by something equally
annoying. In the meantime, we secretly hope that those parents who bought their
children fidget spinners and cubes will be treated to a summer of humming and
clicking and dropping them so that they can understand why we found these toys
so annoying in our classrooms this spring.

“Rejoice in our confident hope. Be patient in trouble, and
keep on praying.” Romans 12:12

Sunday, April 16, 2017

Most mothers, especially those who have special needs
children, would admit one of the strongest and most difficult feelings to
handle is guilt. Often we feel guilty for what we may have done that might have
caused our children to have issues. At other times, we feel guilty for our perceived
sins of omission, failing to do something that might have made a
difference in our children’s lives. The saying goes, “Hindsight is 20/20,” and
looking back on our lives, we recognize the things we may have done differently
had we known what we know now. On the other hand, if we truly believe that God
is guiding our lives, we realize that every event in life is necessary to get
us where we need to be. That consideration relieves some of the pressure we
moms face, knowing that everything in life, indeed, has a purpose.

To be honest, in my OCD fashion, I have scrutinized every
possible thing that could have led to Alex having autism. If I had done things
differently, might he have escaped this condition that makes his life more
difficult than it needs to be? I remember a colleague of my obstetrician asking
me point blank why I was still working midway through a pregnancy considered
high risk. When I explained that my doctor had assured me that I could safely
work up until the day I gave birth, as long as I felt well enough, he scoffed
at me. Then he turned to Ed, wagged his finger, and said, “If she were my wife,
she wouldn’t be working.” Perhaps if I hadn’t dismissed his opinion as
old-fashioned, might Alex have not developed autism?

“Neither this [blind] man nor his parents sinned,” said
Jesus, “but this happened so that the works of God might be displayed in him.”
John 9:3

In my last trimester, I caught the flu and had to be
hospitalized because the virus made my blood platelet count drop to dangerously
low levels. To treat this condition, the internist gave me gamma immune IVs,
which I later discovered contained mercury as a preservative. Had I stayed home to avoid exposure to germs and not gotten
sick, might Alex not have been exposed to the virus and mercury, which we later
discovered had poisoned him?

“So let us come boldly to the throne of our gracious God.
There we will receive His mercy, and we will find grace to help us when we need
it most.” Hebrews 4:16

As a conformist who follows rules and guidelines, I implicitly
trusted Alex’s pediatricians and faithfully took him to receive all of his
vaccinations on time, even though he had been exposed to prednisone in utero
that I was given to treat an autoimmune condition. When they assured me that he
would be fine, I believed them, and gave him Tylenol as they recommended,
never questioning the process. Had I done more research about vaccines and
their toxic ingredients and known about how Tylenol hinders the body’s natural
detoxification pathways, might I have spared him neurological damage?

“Each time He said, ‘My grace is all you need. My power
works best in weakness.’ So now I am glad to boast about my weakness, so that
the power of Christ can work through me.” II Corinthians 12:9

When I suspected that Alex did, indeed, have autism, I tried
to present my concerns when he was three years old to his pediatrician, who
basically dismissed me as a fretting first-time mother. Although I pointed out
his language delays and resistance to toilet training, he assured me that Alex
couldn’t be autistic because “He’s too smart.” Moreover, he was certain that
Alex’s delays in speech and toileting were simply because he was a boy.
Trusting his professional judgment, we waited another year before insisting
that Alex be tested for developmental delays. Had I instead trusted my mother’s
instinct and ignored the pediatrician’s opinion, would a year earlier of
intervention have made a difference in the long run?

“In His kindness God called you to share in His eternal
glory by means of Christ Jesus. So after you have suffered a little while, He
will restore, support, and strengthen you, and He will place you on a firm
foundation.” I Peter 5:10

The bottom line is that I have made multiple mistakes as
Alex’s mom. However, many of the choices I made were based upon trusting
professionals whom I thought knew better than I did. Moreover, my intentions
have been focused upon doing what I thought was in Alex’s best interests. When
I allow my mind to wander into the “What if?” scenarios, I realize that the
guilt I feel is unwarranted and does nothing to change things. Furthermore, I’m
certain that God has forgiven any mistakes I have made in raising Alex. Instead
of carrying around guilt, I must accept the gift of grace and be thankful.

“God saved you by His grace when you believed. And you can’t
take credit for this; it is a gift from God.” Ephesians 2:8

As we celebrate Easter and the resurrection of Jesus, we
know that through God’s sacrifice of His son, all of our sins are forgiven. To
hold onto feelings of guilt diminishes the value of that ultimate parental
sacrifice. Grace is not something to be earned but something to be appreciated
because it’s given in spite of our mistakes. Instead of looking back on what I
think I should have done differently, I need to look back on all that God has
done to make Alex better and how our faith, hope, and love have been
strengthened, trusting that He will guide us to the future glory He has
planned.

“Therefore,
since we have been made right in God’s sight by faith, we have peace with God
because of what Jesus Christ our Lord has done for us. Because of our faith,
Christ has brought us into this place of undeserved privilege where we now
stand, and we confidently and joyfully look forward to sharing God’s glory.”
Romans 5:1-2

Sunday, April 9, 2017

In a previous blog entry, I explained that one of the best
ways to find out what Alex is thinking is to check his Google search history.
Because his speech is still delayed, he doesn’t always verbalize what is on his
mind. In fact, if I ask him what he’s thinking, he’ll often blurt, “Nothing!” to
avoid having to explain his thoughts. Truthfully, most of the time, I’m not too
surprised by the list that appears in his search history, and I’m relieved to
discover that he’s not searching topics that would make me worry about him.
Last night, I took a quick peek at his most recent searches just to confirm
that he's using his iPad and Internet privileges appropriately and was pleased
to discover that he is. Moreover, I found some of his current topics of interest
pretty interesting.

For example, one of Alex’s favorite pastimes is eating,
especially at restaurants, which his search history confirmed. Alex had
searched Google for two nearby restaurants, Culver’s, which is one of his favorites, and
The Port, a drive-in restaurant open only in the summer. He had also searched
the Panda Express menu, probably curious about what they serve and what he can
eat there on his gluten-free and casein-free diet; a Panda Express is currently
under construction in our town. Besides these restaurant searches, he also had
typed in “how to stop being on a gluten-free diet.” I guess he hopes that
someday he won’t have to avoid glutens.

Another common theme in Alex’s searches is celebrities. To illustrate, he looked up the birthdays of former Chicago Cubs baseball player
Sammy Sosa and singer Celine Dion. Alex includes Sammy Sosa in his prayers
every night, and I’m guessing he was curious about Celine Dion after seeing her
on The Voice television show. He also searched for information about his favorite
college basketball player, Valparaiso University’s star player, Alec Peters. In
addition, he wanted to know how much country singer Miranda Lambert and the
former host of the game show The Price Is Right, Bob Barker, weigh. Because
Alex needs to quantify people by numbers, he likes to know their birthdays,
ages, heights, and weights. However, he also knows that asking this information
can be considered rude, but Google can tell him this information without making
him seem nosy.

One of his search topics could seem cryptic, but I’m fairly
certain that it was also related to his interest in celebrities––dead or alive.
He will frequently ask about certain famous people and want to know if they’re
still living. He finds the musical group the Beatles especially interesting
since two of the Fab Four are dead. If he hears something about one of them,
he’ll invariable ask, “Is he one of the dead Beatles or one of the alive ones?”

Yet another one of Alex’s interests––statistics––appears in
his search history. For instance, he was looking up long words, specifically
those with ten letters and sixteen letters. Combining his love of mathematics
with his love of meteorology, he had Googled “13 most likely states to have
tornadoes.” Also, he studies gas prices religiously, so I wasn’t surprised to
see that he was checking out Gas Buddy, which provides current gas prices at
various stations in the area.

However, Alex is the ultimate Gas Buddy, whose eagle eyes
seek out gas prices as we drive along and compare and contrast the different
prices at different places. He’ll excitedly announce from the back seat, “The
gas prices at Speedway in Chesterton are four cents higher than the gas prices
at Family Express in Valparaiso!” We find that his longest and most enthusiastic
spoken sentences typically revolve around gas prices. This is a far cry from
when he was younger and got upset by gas prices, throwing things from the back
seat or kicking our seats if he wasn’t pleased. In fact, we had figured out how
to get around town without ever passing a gas station just to avoid the wrath
of Angry Gas Buddy in the back seat. Thankfully, that’s another phase that has
disappeared.

Perhaps because Alex can now verbalize better what he wants
to communicate, he doesn’t get upset about gas prices and other concerns.
Apparently, he finds language acquisition as interesting as I do. Specifically,
he had searched the following two questions: “When did language start?” and
“When did you [meaning himself because he still confuses his pronouns] start
having language?” Alex’s development of language has been interesting because
he mastered reading and then writing before speaking. Maybe as his speech has
been developing (especially with regard to commenting on gas prices), he has
been more curious about his early language skills.

In reviewing Alex’s search history, probably the most
curious topic I found was helicopter prices. Hopefully, when he discovered how
expensive they are, he realized that he can’t afford to buy one. However, the
most thought-provoking question in his search history was “How long is a long
time?” He may have wondered about that because we frequently tell him that
something happened a long time ago when he asks about some historical event.
For his mind that needs to quantify an amount, he was likely seeking some
specific range of years. Unfortunately, Google’s answers could not give him the
precise details he wanted. Maybe he could put together those two topics, as in,
it will be a long time before Alex can save up enough money to buy a
helicopter.

While we are fortunate that Alex, unlike many people with
autism, can speak and tell us what he is thinking, we are even more fortunate
that we can get a glimpse of his very active mind by monitoring his online
activity. Although he may claim that he has nothing on his mind, his Google
search history proves otherwise, reassuring us that he lives up to his
childhood nickname, Mr. Curious, and still loves to learn something new every
day.

“So I set out to learn everything from wisdom to madness and
folly. But I learned that pursuing all this is like chasing the wind.”
Ecclesiastes 1:17

Sunday, April 2, 2017

Today is World Autism Awareness Day, and yesterday began
Autism Awareness Month. In anticipation of these commemorations, factions have
been debating in the media primarily over two terms: acceptance and celebrating.
For those who view autism as a defining personality trait instead of a
disorder, acceptance of the condition as well as the person with autism is
emphasized. Those parents who seek to make their children with autism better
are accused of not accepting autism or their children. This is nonsense. That
same faction views autism as something to be celebrated. However, for those
dealing with extreme anxiety, debilitating seizures, painful digestive issues,
upsetting self-injurious behaviors, and chronic sleep disorders, autism is a
multi-faceted illness to be cured instead of celebrated. Do people celebrate
cancer or dementia or any other disease that negatively impacts the quality of
life for the patients and their families?

While I accept my son and love him unconditionally in spite
of the autism that makes his life difficult, I do not celebrate autism or
accept that autism determines his personality. We have seen the real Alex as
the obstacles of autism have faded over time, allowing us to glimpse the
brilliant mind and sweet soul behind the limited language, OCD, intense
anxiety, and various physical ailments. Consequently, our abiding love for him
drives us to help him continue to improve through behavioral therapy, music
therapy, nutritional supplements, medication, gluten-free and casein-free diet,
Epsom salt baths, and any other methods we deem safe and effective. We want him
to be the best that he can be to make his life better, happier, and healthier.
Isn’t that what all parents want for their children?

In many ways, Alex at age 25 is essentially a six-foot-tall
preschooler. He cannot be left home alone, cannot dress himself, cannot fix his
own food nor cut it into bite-sized pieces, cannot groom himself, and cannot
ride a bike nor drive a car. He relies upon us for assistance with nearly every
aspect of his daily living. Nonetheless, we are lucky, compared to many
parents. After dealing with sleep issues when Alex was younger, he now sleeps
peacefully through the night, and so do we. Unlike many people with autism,
Alex does not have seizures, does not wander from places of safety, and does
not still have to wear diapers. Thanks to thousands of dollars worth of medication
and years of therapy, the extreme anxiety that led him to attack us aggressively both verbally and physically is now under control, and he manages his fears
through calming techniques. Moreover, unlike many with autism, Alex possesses
verbal skills––although still difficult for him––to express his feelings,
thoughts, and needs. Because we have watched Alex struggle over the years with
all that autism made difficult for him, we know how blessed we are that he has
come this far. However, he still has a long way to go before he can be
independent.

Since the rate of autism has skyrocketed in recent years,
most people now know someone who has autism. However, unless they have lived
with a child with autism, they probably don’t know what life with autism truly
entails. Certainly, empathizing with anyone who has a particular condition
proves difficult unless a person has experienced the circumstances first-hand.
Even having raised a child with autism, I am often dumbfounded when I see
statistics regarding autism and how it impacts those with the disorder and
their families.

In honor of Autism Awareness Month and World Autism
Awareness Day, I will go beyond symbolic gestures of wearing blue or lighting
blue light bulbs. Instead, I will honor my beloved son, who loves numbers and
statistics, and share the reality of autism with some eye-opening data provided
by the National Autism Association.

“Autism now affects 1 in 68 children. Boys are four times
more likely to have autism than girls. The rate of autism has steadily grown
over the last twenty years. Autism is the fastest growing developmental
disorder, yet most underfunded.”

“The mortality risk among those with autism is nearly twice
as high as the general population, in large part due to drowning and other
accidents.”

“Nearly half of children with autism engage in wandering
behavior. Accidental drowning accounts for approximately 90% of lethal
outcomes.”

Despite these rather grim facts, the NAA also states,
“Autism is treatable, not a hopeless condition.”

While April is the designated Autism Awareness (or to some,
Autism Acceptance) Month, for many parents and their precious children, every
day is filled with autism awareness. Some of us still tie our adult children’s
shoes, still remind them to wipe their noses instead of picking them, fix their
gluten-free and dairy-free meals and snacks, and can’t help but feel wistful
when we see their typical contemporaries enjoying a life that we once hoped
ours would know by now. Nonetheless, we continue to do the therapies we know will
help, research for better methods and potential cures, and celebrate our
children for the milestones they reach, not the disorder that made those
milestones more difficult.Moreover, we continue to hope that they will get better with time. Most
of all, we pray to a merciful God to deliver our children from autism and to
keep them safe until we find a cure.

“God is our refuge and strength, an ever-present help in
trouble.” Psalm 46:1

About Me

Pam Byrne is the mother of an adult son, Alex, who was diagnosed with autism in 1996, at the age of four. Since then, she has researched autism and pursued various therapies to help him reach his full potential. Along with her husband, Ed, she coordinates Alex's support services, including behavioral, recreational, and music therapies and respite care. A graduate of Valparaiso University, she is a retired middle school English teacher. She lives in Valparaiso, Indiana, with her husband and son.